A Much-Needed Day with Asher

Sometimes, as we go through this experience with Asher, Shane and I feel so buoyed up and positive, and then there are days, as Shane described it to me yesterday, that we feel like Peter, sinking in the water and struggling to keep our minds focused on our faith in Heavenly Father and his plan for our little Asher.  Wednesday and Thursday have been days that were a bit more like sinking, as we found out about Asher’s chylothorax setback and his dislike of the formula he has to have, his steadiness with his oxygen flow and not seeing much decrease or progress there, and other things.  Even though there are so many miracles, sometimes the discouragement settles in, and we momentarily lose sight of the reassurances we have felt in the past.  Last night, I read the words of the disciples as they were in the raging sea while Jesus slept, when out of fear they went to Him and asked “Master, carest thou not that we perish?”  I felt as if I was being asked the same question Jesus asks them, “Why are ye so fearful?  how is it that ye have no faith?” 

Today was a day of small but sure answers to prayers for Asher. We just need to remember Christ’s words, “Peace, be still.”  Asher showed some good improvements today.  He has been taken off his high-flow oxygen, and he’s just receiving a little bit of oxygen, barely above the percentage of regular room oxygen.  Our cardiologist had been out of town, but he stopped by this afternoon and told us that Asher is ready to move out of the pediatric ICU and to the regular pediatric floor.  His chylothorax seems basically cleared up, so he should be ready for breast milk in four weeks instead of the six we were first told.  The one negative thing is that the conduit that sends his blood to his lungs is already a bit restricted, so he may have to have his second surgery, the Glenn on the earlier side of things instead of later.  They usually like to do it between 3 and 4 months, but it sounded like it would be more like three months, or maybe even just shy of that.  We will just have to pray that his conduit stays open and clear and doesn’t restrict anymore, and that Asher can grow and develop the veins to his lungs so he will be ready for the second surgery when the times comes.  Asher also did better with a couple of his bottles, and awesome with one of them.  It just gave me hope to have more and more success with the bottle in the future.  I’m new to this bottle-feeding, as I have only fed my boys bottles on occasion  when they were older, so it is a learned skill for me too!

Asher was more alert for periods throughout the day too, so I got to be there for him to see when his eyes opened.  Shane came up after work and had some nice cuddle time with him too.

     

Meanwhile, the boys had another great day with Grandmas.  This was Christie’s last day here, so she spent the morning at home with the boys, then came up here with Kelly to see Asher on her way to the airport.  We were glad to see Asher wake up and get a chance to look around at Grandma before she left.  It will be crazy to think about how much he has grown before she comes back the first of June for a visit!  We have been so blessed to have her here to support us during this last week.  Between her and my mom, Shane and I had no worries about the boys or things being taken care of at home. 

The boys had a fun day, making nests out of shredded wheat, and playing with some eggs with chick faces on them.  My good friend Kara called up my mom this afternoon and asked if they wanted to all walk to the park, so they got to go to the park and play outside in the beautiful spring weather we’re having.

 

Tomorrow we move to the peds ward!  We’ll see how different/the same that is from being here.  I plan on staying up overnight all the time once he’s there.  Shane is going to stay tonight with Asher too.  Our nurse case manager said things are looking good to maybe go home in a week or so.  We’ll see what this next week brings.